Search

Carol's whole brain radiation

I was put on steroids for the swelling in my brain, and I had ten days of whole brain radiation. I also was sent to an eye clinic, because my vision had changed. I was given laser surgery to my retina; a tear must have occurred when I fell. I can't remember how long I took Decadron but it was longer than two weeks. I had a lot of weird dreams, and some panic attacks. My face was quite puffy and round. I also had some speech impairments but do not know if that was the drug or the cancer in my brain.

It was difficult to go through all the preliminary meetings (for whole brain radiation) because I was alone and not feeling well--difficult to grasp all that is said. I think they could have told me they wanted to cut my leg off to treat the brain mets, and I would have meekly nodded okay.

I had had radiation twice before so that was not new to me. The set up of making the mask was tedious but not terrible. Daily treatments were not bad because they were very short. I just kept putting one foot in front of another, and getting to appointments. I truly don't think the doctors and nurses realized how hard it was to even talk with them and keep my concentration.

Whole brain radiation began with meeting with residents who took my history (which was in their computer files), giving it to the doctor, then the doctor coming in and having me repeat the entire thing (very tedious given that the patient was ill). Later the mask was made to immobilize my head on the table. Daily treatments involved self-check in, minimal waiting time...and the actual treatment was only a few minutes. Through it all, I felt like a zombie: in shock, just showing up each day and doing what I was told.

I had many side effects: terrible fatigue, extreme depression (crying for hours nightly), frightening dreams, panic attacks. I continued to be unsteady in walking and needed a cane. My speech was impaired at times. I would stutter, or substitute an incorrect word, or be told by family that what I said was not at all what I thought I was saying. I definitely had memory loss. I could not recall things that I know with certainty. I am still struggling with memory loss. Typing on the computer became difficult. I would look down and realize I had not spelled words correctly or had left out letters. I lost my hair after a week and they tell me it will probably be permanent. I had some burning effect on my forehead and ears with small pimples appearing and a rash and flaking skin.

Now, I am improved in terms of symptoms, and my tumor markers have come down significantly. Upcoming MRI will determine if I still have brain mets. I am functioning very well right now. I have some fatigue and lack of energy but okay, and able most days to walk without cane. I am even back to driving. I would be perfectly happy if I could stay at this level.